I've been thinking a lot this week about the way that CF isolates the people it affects. People with CF can't be around each other, because of spreading lung infections from one person to the next. For the parents of young children with CF, that basically means we can't be around each other, either, because it's a bit of a production to arrange for the kids to be somewhere else in order for the parents to get together. That means that you are essentially cut off from the very group of people who understand you and your situation the best.
Take one of my best CF mama friends, for example. We've known each other for about two years, and she lives just across town. In that time, we've gone out for coffee once. Gone out for lunch once. Seen each other in person at CF-related events maybe four or five times. We text all the time, checking on how the kids are doing, who saw which doctor or tried what treatment, and venting about all the things that make life with CF complicated. I may be dating myself here, but although texting is great, it is not exactly the same thing as in-person interaction.
Fast forward to this past week, where unfortunately her CFers were admitted to the hospital for two weeks after a rough winter. This means my friend and her husband are basically being held prisoner 3 miles from my house, making it easy for me to pop over and visit them when my kids are asleep. It's been strangely wonderful, finally having it be easy to see these friends, even in really the worst of places. I've been to see them three times already, and am hoping to sneak in another visit or two before they go home on Friday. Who knows when we'll have a chance to drink cocktails together again once the kids are discharged? Given the circumstances that have let us get together so easily, I hope not soon, but it I will miss this.
Lemon is just starting to figure out that he has CF. He's known the words for it for a long time, but he couldn't really comprehend what it meant. Then, this week, he asked me "Mom, am I the only person in the world with cystic fibrosis?" I assured him that he wasn't, but I don't think he really believed me. I hope that as a child of the digital era, he will be able to develop and nurture friendships with other people with CF, even though they can never meet in person.
Just in the nick of time, with CF awareness month beginning tomorrow, I finished setting up our Great Strides team page, which you can view by clicking here! We participate in this walk every year to raise money for CF research. So much progress has been made every year since Lemon was born, and this year promises to be no exception. In fact, drugs that could treat the root cause of CF for Lemon are now entering Phase III clinical trials! Not only that, but many other key developments in things like antibiotics, drugs to help clear mucus from the lung, and many others, are advancing as we speak. You can see the CF Foundation's clinical pipeline here. If that doesn't get you excited about the future, I don't know what will. And who doesn't want to be part of a winning team? So, for Lemon, and for others like him, please consider making a donation to the CF Foundation. His life depends on this research getting done, and getting done quickly! And, if you're in Wisconsin and want to walk with us, please reach out! We'd love to have you there in person on May 19.
